Multiple sources have confirmed that Dr. Nancy Lee is stepping down as Designated Federal Officer of the CFS Advisory Committee. Also departing is her assistant DFO, Marty Bond.

Dr. Lee was a lightning rod for criticism and controversy. During her term as DFO, we saw violations of the Federal Advisory Committee Act and heard credible allegations that Dr. Lee intimidated several members of the committee for expressing their views (an HHS investigation found no wrongdoing). Dr. Lee was also blamed for the move to hold CFSAC meetings by webinar and for contractor incompetence in managing those meetings. Perhaps the two most glaring controversies were Dr. Lee’s apparent leadership role in the creation and funding of the Institute of Medicine contract, and for publicly admonishing ME/CFS advocates for their vitriol and instructing us to call out those advocates out. As a result of all this, the relationship between the ME/CFS advocacy community and the DFO of CFSAC has deteriorated to the lowest point I have ever seen it, and there were formal requests to have Dr. Lee replaced.

In the past, CFSAC DFOs have served for approximately two years, although I can’t tell whether this is coincidence or policy. Dr. Lee replaced Dr. Wanda Jones as DFO after Dr. Jones was promoted from Director, Office of Women’s Health to Principal Deputy Assistant Secretary. I have found no announcement indicating that Dr. Lee is being promoted away from the Office of Women’s Health, although it is possible that something is in the works. It is also possible that Dr. Jones, who is now Acting Assistant Secretary for Health, decided to remove Dr. Lee from the DFO position for other reasons.

Dr. Lee’s replacement is Barbara James, currently the Acting Director, Division of Program Innovation in the Office of Women’s Health. Ms. James has been with the Office of Women’s Health since 2007, so while she has apparently never served as a DFO of an advisory committee, she is probably familiar with the CFSAC.

I’ve heard through several sources that a fall CFSAC meeting is being planned, and that it will be held via webinar. All this news strongly suggests that the CFSAC charter will be renewed, although there has been no official confirmation of that. What remains to be seen is whether the recent problems with CFSAC were rooted primarily in personality or policy.


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6 Responses to Turnover

  1. Billie Moore says:

    Barbara James is a subordinate of Nancy Lee. So Nancy Lee still is in the position of having much control over CFSAC and other HHS policies, such as the IOM contract, but from behind the scenes with no patient/advocate oversight. And control she will unless she is being removed from the Directorship of the Office of Women’s Health. If she retains her position, it is a good thing for NL, as now she doesn’t have to interact at all (or take complaints) from us.

  2. Joe Landson says:

    I hope Dr. James can at least run a meeting competently.

  3. floydguy says:

    Good riddance to Nancy Lee. She is the epitome of bureaucratic nonsense. The NIH has a budget of $30B but still cannot hold a conference call without major glitches. And any hint of snow closes Washington, DC for the day.

    Unfortunately, Barbara James’ background doesn’t suggest that she’ll be any better. But we’ll see soon enough.

  4. Ren says:

    If a CFSAC DFO job description exists beyond the charter, it seems that the public should have easy access to this. I don’t understand what ethically qualifies Ms. James to have voting rights in CFSAC.

    As an aside, and as posted on PR, an official (Dr. Christopher Beisel) from NIH’s NIAID will be in London on the 9th of September to lead an NIH public outreach session on funding for ME/CFS.

    “Please note, Dr. Beisel is neither a medical doctor nor an ME/CFS specialist, and unfortunately is not in a position to: answer questions related to symptoms individuals may be experiencing, or provide feedback on etiological hypotheses.”


    As far as I can tell, there’s no mention of the above outreach session on the CFSAC or the NIH website. I guess we can FOIA request a copy of Beisel’s presentation?? Imo, a transcript from Beisel’s session should be posted on the CFSAC website as well.

    • Jennie Spotila says:

      Just to clarify a couple things – Ms. James will not have voting rights on the CFSAC. Dr. Lee did not either. The role of the DFO is defined by statute, regulations and department policy, and it’s an administrative role. Ms. James has never served as a DFO before, but one would hope she will be trained in the various requirements of the job.

      Dr. Beisel’s presentation is very interesting. He is the program officer for the NIH funded UK biobank, so I assume that’s the connection to the London School of Hygiene and Tropical Medicine. I’m not surprised it isn’t listed on the CFSAC or NIH website, but you are absolutely right that we should have access to the presentation. I am aware of one request already made to the session sponsor, so I think we can expect access. A FOIA for the presentation is also an excellent idea.

  5. Ren says:

    Thanks for clarification/correction, re voting rights.

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